Neuro pain or "real" pain?

[tason28]

I am 6 months post injury. T9/T10 complete para. I left rehab in Dec 08. Right before leaving I started experiencing pain in my rectum which felt like having a supreme wedgie for lack of better terms. My doctor quickly diagnosed it as neuro pain. Since then I have been on a medication roller coaster. My pain started to get worse and my meds kept getting boosted. The pain transformed into feeling like a 2 liter bottle of frozen water was shoved up my butt. Also my groin felt like it was being crushed in a vise. My doctor just kept boosting my meds. Now on gabapentin 3900mg a day and lyrica 225mg a day. Still have no relief. Have had 4 utis since leaving rehab in december. Only time I ever had total relief of this pain was twice when I started Cipro. But gradually the pain came back as I took Cipro. Pain doctor just prescribed me Perkoset which I take every 8 hours. Perkoset does not get rid of pain but it totally suppresses it. When it wears off pain starts to come back. If this was neuro pain then from what I have read perks should not have any effect on the pain at all. I have a colonoscopy and cysto/urodynamics set up for this month to rule out bladder/bowel problems. What I want to know that no doctor has yet been able to tell me is whether or not this is neuro pain. I have searched a ton of threads on this site and others and dont see anyone talking about this butt pain as neuro pain. I would greatly appreciate anyones input on this. Do any of you experience this same type of pain and if so what type of pain is it? What seems to help? The high doses of gabapentin and lyrica do not help and they really mess with my head. Do any of you take other types of meds that help better? I have seen posts for patches? and something with cloni in the name. Do these help? Thanks so much for listening.

[arndog]

tason -
First of all , I am sorry you are going through all this pain, I have been there and I know how consuming and difficult it is.

This is neuro pain. Many, many people on this site describe it exactly as you do, genital pain, burning, the sensation that someone has stuffed a beach towel up your butt. There was one recent thread that had many vivid analogies.
I doubt Cipro has any affect on the pain , however UTIs DEFINATELY exacerbate neuropathic pain. Often people first know they have a UTI when the neuro burning down a leg or in the groin increases.
Narcs, like Percocet (oxycodone) definately help people live with this condition. They may not directly decrease the neuro pain but they definately help and make it more manageable. Pain is a combination of painful stimuli or afferent nerve (incoming) impulses plus one's emotional response to the whole thing - it is a complex not well understood phenomenon. It is worth reading about. Dave Berg on this site has an excellent treatise on a website I am sure he will give you.
I have a question..... Do you have a pain specialist to help you manage and understand this? I think it is important to have this.
They know how to manage these medicines. This won't go away tomorrow. You are going to struggle with the pain and the side effects of these meds for some time and it will be a big struggle that I think with persistence you can get a handle on.
It is okay that Percs are working to help. I take Elavil 25 mg at night plus Lyrica plus an occasional oxycodone to get through.
More later,,,
good luck

[Danine]

Yep, I've had that permanent wedgie feeling too. Used to be constant, it's usually just before and after bowel movements now. I'm a t8-9 incomplete para, 1 yr 8 months.

I take 1200mgs of Gabapentin per day. I really need 1800 mgs, but the "cog fog" it causes won't allow me to function at that level. The 1200 mgs takes the edge off, but I still have a lot of pain.

My legs and feet have a hot/cold/wet/buzzing/electrical sensation. In my thoracic cavity, I have a dull constant ache along with sharp stabbing sensations.

[quad79]

Yep,I have that same feeling every day.I've yet to have anything take it away though.Sorry,it's anything but pleasant for sure.

[rfbdorf]

My wife (T5) often has the wedgie feeling, though for her it's not nearly so bad as you describe. It started at around the same time as she regained a small amount of feeling in the general area, about 2 years after injury.
- Richard

[scrappinturtle]

I understand your pain, I too suffer from pain in rectal and vaginal area.I had a posteior repair with hysterectomy and the mesh some how damages my pudendal nerve.It happened 6 wks postop, butI feel the same pain always sometimes it feeels like a hot poker being stuffed up in my vaginal area.It sucks, I could go on and on to tell you how it feels.I hope that I can learn something from this forum to help me.I hope and pray each day that the pain will get better.You' re not crazy its not all in your head it is TRUE pain.